https://orcid.org/0000-0002-8560-3016
ABSTRACT
The present study aims to explore how a new assignment in an otherwise familiar context is experienced by rehabilitation team members.
Methods
Participants in the present study were eight clinically experienced occupational therapists and physiotherapists who collected data in an observational longitudinal study of the rehabilitation process after stroke. Semi-structured interviews were conducted, and transcripts of the interviews were analyzed using content analysis. The transcripts revealed the informants’ perspectives and their experiences of follow-ups in the patient’s home.
Results
There was one main category, a door to development, and three subcategories: the entrance, discovery in place, and the exit. All informants expressed that they had gained new knowledge of the situation of people who have had a stroke and that taking part in research uncovered a wider perspective of the patients’ situations and the importance of follow-ups in general.
Conclusion
New insights into the patients’ situation with clinical implications for interprofessional care can be gained by collecting data in a research project that is related to, but different from, everyday clinical practice. Such an assignment can be experienced as professionally rewarding, and we propose that offering such a role change/transition may open the door to development for rehabilitation team members.
Introduction
Person-centered care and rehabilitation is founded in ethics, and the point of departure is to support health and the patients’ resources,Citation1 preferences, needs, and values.Citation2 Moreover, person-centered care and rehabilitation means putting the comprehensive needs of people at the center and empowering them to have a more active role in their rehabilitation.Citation3 Yet, it is not well implemented in practice,Citation4 and differences in how health professionals and patients perceive goals, content of their rehabilitation, and how to reach goals have been reported.Citation5–8
Validated and reliable measurements are increasingly being used by health-care professionals to facilitate treatment planning and clinical decision-making.Citation9 However, it has also been shown that the use of standardized instruments may not be enough to unveil all needs as experienced by the patients.Citation10,Citation11 In the aftermaths of stroke, a significant proportion of patients has been reported to have unmet needs for rehabilitation,Citation11 some of which were not identified by instruments.Citation12 Consequently, it has been recommended that instruments be supplemented by a dialog between the patient and the health professionalsCitation12 or the patient’s narrative of own view of the health situation.Citation1
Another way reported to support health professionals’ wider understanding of the patients’ situation is working in the patients’ home.Citation13 However, team members’ experiences of home rehabilitation were mainly related to their own profession and less to the patients’ perspective or that of the whole team.Citation14 Hence, there is a call to increase knowledge about how rehabilitation team members can achieve a broader perspective of the patients’ situation than that of the own profession. Can the perspective of rehabilitation team members be broadened by a new assignment in a familiar field?
Therefore, the aim of the present study was to explore the experiences of occupational and physiotherapists participating as data collectors in a scientific study of rehabilitation needs after stroke.
Methods
A qualitative study was conducted to capture the experiences of clinically working therapists engaged in collecting data in a research project.
The research project was a longitudinal, observational study in Sweden with the aim to identify patients’ needs of rehabilitation and support during the first year after stroke.Citation11,Citation15,Citation16 Data were collected 3, 6, and 12 months after stroke. The data collection was performed by occupational therapists (OT) and physiotherapists (PT) face-to-face in the patients’ home using a research protocol, which included questionnaires, performance-based tests, patient-reported outcome measures (PROMs), and two standardized open-ended questions.Citation11 The data collectors were informants in the present qualitative study. They did not have a therapist–patient relationship in the research project. Collecting data part-time in a scientific study did not form part of their usual work. The research project was approved by the regional ethics committee in Stockholm, Sweden, #2005/1462-31/3 and #2006/683-32.
Participants
In all, 22 therapists participated as data collectors in the observational longitudinal study. Purposive sampling was applied. Therapists who had performed more than occasional follow-ups were invited by mail or telephone by the first author to participate in the present study. Five OTs and three PTs were approached and informed about the present study. They all consented to participate, and their characteristics are presented in . All eight were women, between 25 and 58 years of age, with experience in rehabilitation of patients with stroke. Length and type of experience varied between newly graduated to many years of professional experience. Two of the informants were also lecturers in stroke rehabilitation.
Table 1. Informant demographics.
Data collection
Semi-structured interviews were conducted, one with each informant individually at their workplace, lasting between 30 and 60 minutes. The informants were asked to describe their experiences of collecting data in the research project and to reflect on these experiences in relation to their everyday clinical work with patients after stroke. The research questions are presented in . Follow-up questions were used to further elicit experiential accounts. Seven of the interviews were conducted by AWW and one by IB and LJ. All interviews were audio recorded and then transcribed verbatim.
Table 2. Interview guide.
Data analysis
The transcripts were analyzed according to content analysis.Citation17 Initially, all transcripts were read. Thereafter, meaning units were identified, condensed, and coded separately by two of the authors (IB, LJ). Then, similarities and differences in coding were discussed to reach consensus. The codes were thereafter merged into categories. The emerging categories were then discussed among all authors. In order to increase trustworthiness, the authors discussed and reflected upon the emerging findings, codes, and categories in relation to their pre-understanding based on clinical experiences.Citation18 Two of the authors had long experience in rehabilitation after stroke (LvK, AWW), while two (IB, LJ) were undergraduate students at the time of transcript analysis.
Results
The interviews provided an understanding of the informants’ perspectives and described their experiences of follow-ups in the research project in the patients’ homes. They all presented thick descriptions of the experiences of what participating as data collectors entailed. The analysis revealed one main category, a door to development, and three subcategories: the entrance, discovery in place, and the exit. All categories were found in all informants’ interviews. They all expressed that they had gained new knowledge of the situation of people who have had a stroke and taking part in a research study uncovered the importance of follow-ups in general. This new knowledge was experienced by the informants to be of importance for the quality of their own work in rehabilitation after stroke.
The entrance – fears and expectations
Entering a person’s home with a different aim than the usual, e.g., to check assistive devices, adherence to training programs, unfolded new experiences. The informants expressed that they did not know what to expect, which made them feel insecure. Nevertheless, while collecting data, the informants sometimes felt compelled to act as usual, i.e., to offer an intervention. Those situations were expressed as difficult to handle as this was not the purpose of the visit.
But for patients with large and tangible rehabilitation needs I could sense that, even if I had not promised anything, they still might think that when I left, I would initiate a lot of things. This was a bit delicate to deal with, to not raise their hopes that I would initiate more rehabilitation for them (TA).
The informants reported uncertainties about how the patients would react to discussing some aspects of life addressed in the research protocol, e.g., questions regarding intimacy. These questions were considered to be too private and were not usually dealt with by the informants. However, the informants expressed that most patients had no problem answering these questions.
I had preconceptions about what would be awkward to talk about with an unfamiliar person (TA).
Furthermore, they had anticipated patients with more severe disabilities to score lower on quality of life than those with less disability. Yet, the patients did not always score in accordance with their degree of disability. Hence, the outcomes were not always in line with what the informants had expected.
Discovery in place – the importance of context
Initially, the informants were fearful and did not know what to expect. However, they soon found that this new assignment offered a possibility to take a more open and listening role. In the patients’ homes, the informants found it easier to open doors to aspects of the patients’ lives than in the clinical context. Informants expressed that the home gave the patients opportunities to reflect upon their current situation. The informants reported that the patients had lots of questions and experiences, which they were more than willing to share.
Most of the patients I met were positive to the visit and thanked me afterward, and … . I got the impression that they felt it was good for them to be able to sit down and talk for a while (LP).
Hence, the informants had to allow patients ample time to reflect upon their situation in relation to each question. Furthermore, the informants experienced that they had to be both attentive, responsive, and flexible to the patients in order to complete the data collection.
They also expressed that asking questions as a part of the research project and in place – in people’s homes – gave them the context that allowed them to better understand each health profession’s contribution as well as their own in the realm of rehabilitation after stroke.
As you ask questions from the questionnaire, that bring things to a head, you might bring up issues that begin to make them reflect (KL).
The exit – a learning experience
After completion of data collection, the informants reflected upon the experiences they had gained by performing new tasks in the patients’ homes. They expressed that they had obtained new insights into the life situations of the patients in a wider range of aspects through the various questionnaires in the research protocol and the reflections made by the patients. These included descriptions of situations not discussed in everyday therapy sessions, e.g., existential issues or issues specifically related to the home environment.
The informants carried out several follow-ups performing the same data collection using the same research protocol, which gave them opportunities to see variations among patients.
You have gained enormous respect on seeing so many patients and you try to see beyond hospitals and scrubs and try to keep in mind that this is an individual (SM).
Moreover, the informants experienced that the patients often described their rehabilitation as a fragmented process, and they did not seem to know who they had met during the rehabilitation. They could rarely distinguish between OTs, PTs, and nurses. The patients appeared to have difficulties in defining what interventions they had received, and which profession delivered what in the rehabilitation process. The informants became aware not only of their own professional roles’ contribution but also those of the other team members. They expressed that the individual therapist appeared to only focus on parts of the patient’s situation.
It is different when the questions one poses are more wide-ranging – not specifically relating to physiotherapy, occupational therapy or nursing. Then you realize that what you do clinically yourself, is quite narrow and it is easy to focus only on that which you do yourself (KA).
Also, when comparing their usual clinical work with that of data-collection within a research project, the informants found their usual focus to be narrowed down to the perspective of their own profession.
The informants found the wider perspective meaningful and wanted to include their new insights into their daily work within the rehabilitation of patients with stroke. Furthermore, they wanted to share these experiences with other data collectors, team members, and within their profession.
It might have been fruitful to have more time to discuss with the other data collectors – the questions that were raised by the patients and how to tackle them (BS).
In summary, new insights had been gained while collecting data in the research project. In addition, clinical implications were presented based on these new insights, e.g., regarding the organization of rehabilitation and the interactions of the different health professions involved. The informants found the data collection professionally rewarding, especially with regard to patients sharing their experiences as well as taking part in a research project.
Now I have a different picture of what happens after the acute phase – I have only worked in acute settings before (GA).
It was fun to be part of a project like this which meant a break from the everyday clinical work – an opportunity for development (BL).
Discussion
In this study, therapists involved as data collectors in a research program gained experiences related to but beyond their everyday professional roles. This made it possible for them to look upon their work and at the patients’ needs after stroke with new eyes and to reflect from a wider perspective. The analysis revealed one main category, a door to development, and three subcategories: the entrance, discovery in place, and the exit, describing a process of development based on their experiences. The study findings will be discussed using the concepts role identification, situational strength, and culture from transition theory as a frame of reference.Citation19
The entrance – fears and expectations
When the informants entered a patient’s home to collect data, they became aware that they had a new role in the study context as data collectors. Yet, they were familiar with working with this group of patients. To come into a patient’s home as a professional has previously been found to generate a different set of roles in comparison with the role sets used in the clinic.Citation7 Hence, being a data collector in a research project might be experienced as an entrance to a role transition generating an openness for new perspectives.
Initially, most informants expressed that they had mixed feelings addressing some issues in the research protocol for which they felt unprepared. However, as the patients were willing to address these issues, a wider patient perspective unfolded. This might be viewed as a part of a transition process where fear and mixed feelings initially might be present when new and unfamiliar issues and roles have to be enacted.Citation19 Yet, the informants were also very enthusiastic about the opportunity to meet people with stroke and gain a new entrance to their lives. Overall, the informants found the new tasks and responsibilities interesting.
Discovery in place – the importance of context
In the patients’ homes (place), the informants described experiences and discovery of new possibilities for reflection and discussions. The home as a place supporting patient reflection and awareness of the new situation after a stroke has previously been reported.Citation20,Citation21 The questions asked during data collection and the place appeared to give the patient an opening to reflect on the new situation and to give the informants a narrative with a wider perspective than they were used to in their everyday professional role. Thus, the home might supply a more supportive context than the clinic for people with stroke to reflect, reach awareness, and share a narrative of their new situation, which can convey a wider perspective to health professionals than the clinic.
In the context of this research project, a large part of the data collection was performed by means of PROMs. The findings may suggest that including measures that have a patient perspective may invite people with stroke to reflect on their situation. However, our findings also suggest that ample time should be allocated to allow for such reflections.
We propose that the experience of asking questions beyond the professional realm and seeing many patients in place created an opportunity for a wider and more integrated understanding of the patient’s perspective than the informants’ previous professional experience. This discovery of a wider perspective appeared to be perceived by the informants as a stimulating and a worthwhile experience.
The exit – a learning experience
Working with data collection in a research project where different professions do the same tasks might strengthen teamwork. During data collection, the informants became aware that the patients did not see boundaries between the professions in the rehabilitation. It has previously been reported that it is not of interest to the patient to know who is responsible for what and hence it can be questioned if health-care professionals should expect the patients and their carers to do so.Citation22 The incorrect presumption held among health-care professions that patients are aware of which profession supplies what services needs to be understood and considered in both clinical work and in education.
This lack of awareness of how the contributions of different professions involved in the rehabilitation are perceived by people with stroke suggests a need for a more cohesive culture in rehabilitation and interprofessional teamwork. Furthermore, these findings support the need for interprofessional education and work in accordance with the framework for interprofessional education and collaborative practice as defined by the World Health Organization.Citation23
A door to development
The findings of the present study are in line with a previous study that reported that clinicians had had positive experiences when participating in research projects.Citation24 However, in that study participation was also associated with challenges regarding exchange of information and communication between staff members and research groups, which to some extent was also found in the present study. In the present study, the informants missed having a specific platform for the exchange of experiences among data collectors. They expressed feeling alone with their reflections about the research process that might indicate a lack of a social domain, culture, and context where the new role was situated. According to Ashfort et al., role boundaries are situated in social domains and local contexts that are rich in culture where experiences can be exchanged and behavior maintained.Citation19
Working in a research program as a data collector might be viewed as a role transition. However, as the informants had a familiar role to start with as a member of a rehabilitation team for people with stroke, the boundaries between the familiar and the new role were flexible and permeable. Flexible and permeable role identities facilitate role transitions according to Ashfort et al.Citation19 Hence, it appeared that the transition and integration of the new role with a wider perspective was fairly effortlessly accomplished by the informants. They expressed gratitude and appreciation for having had the opportunity to learn and widen their perspective of the patients’ situations.
We conclude that offering a related but new assignment as a data collector in research may open the door to development for therapists.
Methodological considerations
This qualitative study was conducted in the context of a longitudinal, observational study in Sweden using an explorative approach with qualitative content analysis. We specifically aimed to explore the informants’ experiences and allow the informants to reflect.
There were few informants compared to the number that had been acting as data collectors for the project. However, they were selected to represent different ages, occupations, and have made several data collections to render rich descriptions.Citation25 The interviews were conducted sometime after the informants’ data collections were completed. It was assumed that the time passed had given some perspective to the events that would allow for and facilitate reflections. On the other hand, it may also have limited the informants’ recall. Nevertheless, the informants gave thick descriptions of their experiences as illustrated by the quotations.
Findings from qualitative studies cannot be generalized. The trustworthiness and transferability of the findings in the present study build on the researchers’ systematic reflections and agreement throughout the analysis. . A strength is that the initial analysis, the coding, and identification of categories were performed by the authors with very limited experience of rehabilitation after stroke. Thereafter, the analysis systematically and critically involved all authors, and the findings were questionedCitation17,Citation26 in relation to two of the researchers’ own clinical experiences and in collecting data in patients’ homes (Lvk, AWW).
Conclusion
In summary, new insights into the patients’ situations and perspectives with clinical implications can be gained by collecting data in a research project that is related to, but different from, everyday clinical practice. Such an assignment can be experienced as instructive and professionally rewarding, and we propose that it may open the door to development for stroke rehabilitation team members.
Acknowledgments
We would like to express our special thanks and gratitude to the informants for sharing experiences of their dedicated work.
Additional information
Funding
References
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